One thing after another - feeling seriously overwhelmed!

Hi guys, hope everyone is getting through the winter ok and that you are all well!!

OK ... here goes. Looking back, my asthma has been getting progressively worse for the last 4 winters. I didn't go to see my GP because if it though, because I wasn't the typical ""noisy lungs"" asthmatic, so just got on with stuff. In fact when I moved house 5 years ago while at uni I saw them once to get asthma meds and went yearly for my flu jab, I'd ring if I needed more salbutamol. I ignored chest infections,, deciding that it was viral anyway so no point in wasting their time, it'd go away. I continued to ignore my symptoms getting worse and using more and more salbutamol. Carried on with the brown and blue. Looking back I really should have seen GP 4 years ago - I'd spent a few years on Seretide intermttently when I was younger.

Then about 18 months I got back from France afer having my best period in years - yes used my brown inhaler as I should, but didnt use my reliever at all. I returned to work in september and my lungs began to get worse and worse. I'd be at work and get to the point where I was so short of breath I couldnt talk., work would try to send me to the walk in/a&e near work, but I'd multidose and it'd get better. I also had back to back chest infections which obviously made breathing worse.

Then about this time last year (possibly longer) I was so poorly I ended up at A&E had nebs and steroids. Refused gases and cannulas as seriously needle phobic and went home. After that did g oand see GP who slowly increased treatment, referred me to my consultant and has been very concerned about how quickly my asthma goes really bad. I've been diagnosed as having severe and brittle asthma for about a year now. Lots of hospital admissions and time in resus, HDU and ICU, being ventilated (NIV) and needing lots of IV treatment to dort out frequent and horrendous attacks.

GRR! I am going through a *stable* period ... shock horor!! I've been out of hospital a whole 2 weeks and the asthma hasnt gone off on one!!! I'm sick of the steroids and their side effects so ignored my new consultants advice (now at a spcialist centre for severe and brittle asthma) to taper down very slowly. So Ive gone from 40mg pred to 10 in the space of about 10 days. Lungs have coped ok with it! a few days ago I forgot to take my 10mg in the morning as had to get up and go out, had a very physicaly demanding day and lungs werent happy, reurned home to some major structural issues at my house and a shed load of triggers, Lungs struggled, so I nebbed. Then in the early evening I realised I hadn't taken steroids so I took 5mg to cover adrenals.. I later (confirmed by medical team) went into adrenal crisis and was very poorly.

Now they're talking about adrenal insufficiency and seeing endo people etc. Asked some questions which they say suggested some adrenal insufficiency before the asthma went crazy. Also said that what happened the other day needs a 999 call because you can die very quickly.

Another, slightly pathetic, but really significant thing for me is that after talking to my asthma nurse today is that at the end of the month my care is going to transfer entirely from my secondary centre to my tertiary centre, meaning I will no longer be under her. I am really scared about this as I have such a good relationship with her, and she is responsible for me finally beginning to accept the diagnosis, telling me when I need to go to A&E and when I;ve been stupid for leaving it too late and actually keeping me alive .. lots by hamering home how important it is to go to A&E BEFORE attacks are life threatening.

So much information to process ... Don't even know where thats come from let alone how to deal with it?! I want it all to go away :'-(

If you've got this far, thank you so much for reading!! Laura xxx

4 Replies

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  • Hugs!! I am not anywhere near your level and luckily don't have the adrenal stuff to deal with, but I also get fed up of the constant relentlessness of it and it's also wearing me down and making me want to rant! So you are not alone. Just come out of a mini admission where I'm not even sure whether or not I should have gone as it wasn't that bad in the end, then had to deal with them really not understanding atypical asthma and trying to explain with not much breath (luckily I had my written summary which I created for this very reason).

    Oh and if you\re not with your asthma nurse anymore, pplllleeaasse send her my way as she sounds amazing? ;) I don't really have anyone to ask about stuff when I'm not sure and I don't know about anyone else but I find everyone says slightly different things a lot of the time and it's hard to work out who's right (not nec a case of who is most specialist as in my case the one who is is also not such a good listener and doesn't seem to get *my* asthma very well).

    Sorry, a bit self absorbed there I guess but just wanted to say I totally get that feeling as you know! For me, mine is the worst it's been atm so while that may not be as bad as others it still feels fairly relentless. I'm sure many others know this as well and can sympathise.

  • hugs. I can totally relate to you as I am going through a very similar situation. my asthma is more stable now even though i did do something very stupid last year and maybe possibly why i got another condition but as long as my asthma is stable i am happy and cons seem to agree. it is hard to accept change and deal with it, but if you have a good supportive resp team and supportive friends and family it does help a lot, also remember there is help out there, you just have to ask for it.

  • Hi guys, hope everyone is getting through the winter ok and that you are all well!!

    I'm sick of the steroids and their side effects so ignored my new consultants advice (now at a spcialist centre for severe and brittle asthma) to taper down very slowly. So Ive gone from 40mg pred to 10 in the space of about 10 days. Lungs have coped ok with it! a few days ago I forgot to take my 10mg in the morning as had to get up and go out, had a very physicaly demanding day and lungs werent happy, reurned home to some major structural issues at my house and a shed load of triggers, Lungs struggled, so I nebbed. Then in the early evening I realised I hadn't taken steroids so I took 5mg to cover adrenals.. I later (confirmed by medical team) went into adrenal crisis and was very poorly.

    Now they're talking about adrenal insufficiency and seeing endo people etc. Asked some questions which they say suggested some adrenal insufficiency before the asthma went crazy. Also said that what happened the other day needs a 999 call because you can die very quickly.

    Hi Laura, its not surprising that you were unwell given that you reduced your steroids so fast, - really fast. My last taper was by 5mg every two weeks!! That was before I was AI, and prevented me from experiencing any illness or symptoms relating to a quick taper and adrenals/pituitary not 'waking up'. Of course on 40mg of pred your endocrine system will have gone to sleep - that doesn't mean that you have permanent AI, and it may well be that with a slow taper you would have been fine (as I have been up until the age of 40). The only way you will know is to come off them very very slowly as I always did per consultants recommendations, or to have testing, but you can't have testing whilst on pred anyway, I had to be off it before testing otherwise all you are doing is measuring the pred effects and not what your body is doing. I had most of a year off pred before diagnosis, which whilst rough was a good thing as it gave my endocrine system a chance to see if it would wake up and start producing more cortisol of its own accord. Granted for me, it didn't, but in some people all they need is time for things to right themselves though thats increasingly more difficult with repeated doses of steroids intermittently as it will cause repeated intermittent suppression.

    Did you get treated in hospital for adrenal crisis? Were you given IM or IV hydrocortisone? Have they suggested that you have better steroid cover at the moment?

  • Not been off pred in a year and being very vain, but sick of the side effects and consultants comments about weight gain and having a cushingoid appearance. I'm in my mid twenties and *used* to be attractive!! Re the reduction, my asthma nurse let me do it - she knows me well and I think she knows I'd do it anyway, so best for her to be supportive and know how to advise me if/when things went wrong!!

    Nope didn't get treated in hospital - suddenly felt like I had really bad flu, dizzy, headache, sicky and then conked out for >15 hours. Woke feeling like death and with lungs being horrendous, so took extra pred to calm lungs down. But as the day went on (after taking extra pred) started feeling better!! Asthma nurse said I should have phoned 999 though - didn't know what it was though, thought I was growing something (cold/flu or something). It wasn't until I spoke to Nimz I found out what it could be and then my asthma nurse confirmed what Nimz had said!!

    Thing is id taken 5mg pred so it didn't even enter my head!

    Also I've tried slow tapers and I get to 30-35mg pred and lungs kick off, then going upto 40 doesn't do much. But the jump from 10-40 calmed them down and prevented an admission.

    Not said anything about steroid cover, but I have to see gp later in the week and looks like I'm being referred to an endo.

    I'm also concerned that the longer I'm on pred, the less likely they are to wake up again. Don't want to have to deal with AI on top of the flipping asthma!!

    Finding it all very overwhelming at the min!!!

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